Mesothelioma and My Fight to Live

BY Mavis Nye BCAh

PUBLISHED April 12, 2017

Editor’s Note: This piece was submitted by a contributing writer and does not represent the views of CURE Media Group. I was a war baby born in 1941 and I had lived a childhood that was just normal and happy. I met the love of my life at 15. Ray was an apprentice shipwright in Chatham Dockyard, and as his apprenticeship was completed at 21, he was called up to do national service. In those two years I was finishing my education at a technical school and then became a trainee chef at the Bull Hotel Rochester. We married in 1960 as Ray had returned to the dockyard and we settled down. He used to come home covered in a white dust that I brushed out of his hair, then shook and washed his clothes. Yes, I had a washing machine in those days.

We now know that the asbestos he worked with in the ships was to have such awful consequences. In 2009, 48 years later I found that I couldn’t breathe and was rushed in to have seven liters of fluid drained from my lung. I was diagnosed with mesothelioma and given a death sentence of three months. I couldn’t accept that and after my pleurodesis at the Guy’s Hospital in London, I started my chemotherapy – Cisplatin and Alimta – which is the standard treatment in the UK. I got shrinkage, and this worked for 15 months then it started growing again. I was offered the NGR-hTNF trial at Maidstone, a clinical trial that acts on the tumors’ blood vessels, which I’m afraid didn’t work for me. Or maybe I had a placebo.

So, after two sessions of Cisplatin and Alimta, I became allergic to the chemo. But it did work and we had stability again for a while...then growth was found in my next scan.

The Life Line

What would I like next as there are no new trials or chemo? I’m not used to a doctor having no answers. 2013 I emailed Saint Bartholomew’s Hospital and that Friday. I was in an appointment where they offered me the last place on the ADAM trial, but it would mean another biopsy and then I might not even be suitable. He threw me a life line of GemCarbo chemotherapy and I could have that locally. Back to Canterbury, and I was on chemo again until September. The October scan was bad news...the chemo hadn’t worked. A scan every three months was showing the growth of 3 mm every three months. The marker tumor was 17mm. I wasn’t happy.

So I got right behind the Saatchi Bill (The Medical Innovations Bill) and worked with Lord Saatchi and the doctors. I was also on the committee when it was launched at the House of Commons. In 2014, a doctor gave me the advice to go to the Royal Marsden where they were starting a trial that might suit me, so I asked my oncologist and she referred me. I was on the immunotherapy drug from Merck, a phase 1 trial. It isn’t just for mesothelioma but 30 other cancers. But the trial, MK-3475 is for a drug (Keytruda) being tested as it blocks the interaction of a substance called PD-1.

With journeys to the Royal Marsden at Sutton Surrey for two years, I had 53 infusions and the drug and no side effects, as it isn’t chemo and I showed a gradual shrinkage of 100 percent with tumors disappearing. On my last scan, I didn’t need to get a print off this time. My doctor said there is no active mesothelioma in my lungs. The tumors are there, very small but there is no active mesothelioma in them.

We couldn't take that in—there was a silence and we just looked at one another. My thoughts on all this is now Why! Why me?? There were three mesothelioma patients that started the trial in the UK and sadly I’m the only one to still be on it. The others failed so proving it isn’t a drug for everyone. My blood was taken every two weeks, and my DNA was looked at by Merck, but I haven't had a clear answer as to why me. The drug has been very kind with no side effects except very dry skin that causes an itch and a rash, but steroid cream is working on that. Besides constipation, I can’t see anything else has been a problem.

It builds up a little army that remembers when it sees the mesothelioma again and attacks. So, the effects should last a long time and stop any tumor from progressing again. If it did show I can go back on the drug for another year which is so good to hear I have a backup plan. Being honest, the treatment has worked for me and currently there is no active mesothelioma. There is still a long way to go to getting a cure for this terrible disease, but this is a step in the right direction.

The fact is that all the Mesothelioma patients who started the trial with me have now all passed. We can give hope, BUT we mustn't give false hope. So now I have thrown myself into my work as a patient rep within the NHS and cancer research, even approving new trials by commenting on a trial to give patient's view. And I’m just going onto The CONFIRM trial board for CRUK to give the patients’ view. I also have pushed asbestos awareness speaking in Holland at the European Asbestos Forum and in the UK, as this is where the awareness is needed. Although asbestos is banned it is in so many places, it is still in buildings built before 2000 and 85 percent of our schools. It is even in the House of Commons and Buckingham Palace. We are still surrounded by the deadly material and it has to be managed and removed safely. There is so much to do and I just don't know how long I have to do it.